Home in Time for Christmas (?)

Hi Everyone,

Natalia’s journey continues to make great progress from the depths of where she was just before her transplant last w/end – she continues to fight, to heal, to improve and get closer and closer to being able to return home; indeed, if all goes well, there is optimism that she will be home in time for Christmas(!).

Natalia’s progress, though steady, hasn’t been without a setback of sorts.....the setback seeming relatively “minor” in the context of recent weeks for Nat and all she has been through. Under more normal circumstances, the setback and even more so the remedy would have seemed a lot more significant.

Natalia had to have a tracheotomy.

Going off the ventilator last week proved too early as mentioned in last update, so for a more phased approach doctors had to give Natalia a “trach” so that when she needs the assistance of a ventilator, it's already connected to her via intubation via her throat (vs. having to re-insert all the tubes through her mouth, down her throat and into her lungs like previous ventilator setup) and all the medical staff have had to do is turn the ventilator back on for instant mechanical ventilation when required. This method has allowed Natalia to breathe by herself for growing periods of time, starting with short periods at first and now, at current stage, she’s pretty much breathing entirely by herself all day and, very soon, all night.

Natalia’s sedation has continued to be reduced. She’s no longer sedated for the purposes of actual sedation, but due to heavy pain medications, is still groggy.

Her awareness of everything is there though.

The only thing that’s preventing her from being able to speak at the present moment is the tracheotomy (which will likely be closed up in the next couple of days). So she’ll be able to start communicating properly very soon.

Swelling is down almost entirely now.

Physiotherapy began a few days ago, and there is optimism that medical staff will be able to get Natalia up and walking for short periods of time as soon as today.

2 out of 5 drainage tubes that are connected to her chest cavity to drain excess fluids and blood have now been removed.

The blood infection is still there but continues to be managed.

Her vitals remain strong. And her white blood cell count which spiked up to 29 late last week has trended down to 13, which suggests that the immunosuppressive drugs are working and preventing her body from rejecting her lungs.

Natalia will be moved out of the ICU in the next couple of days which will be a huge milestone - down to the 7th floor where TGH has a “Step Down Unit" where extensive physiotherapy and rehabilitation will take place as they prepare Natalia for her return home.

So some amazing progress has been and continues to be made.

Martin and family are doing very well and are of course more and more relieved. Their happiness quotient continues to grow as Natalia gets stronger. Due to the rollercoaster ride they’ve been on in recent weeks and the overall ride they’ve been on due to the nature of Cystic Fibrosis, they do have some inherent caution as a preemptive coping mechanism so-to-speak because they do know things can change. They haven’t been jumping up and down with blind elation, but their smiles are defininitely getting wider and wider. And their excitement grows about the very real prospect of Natalia getting home in time for Christmas – something that, as you well know, was beginning to seem like an impossibility up until her new lungs came.

It's all a continual testament to the power and life saving & life changing importance of organ donation. As John stated so well in the last CBC installment, if there is a moral to this story, let that be it. The difference it makes cannot be put into words.

Thank you to everyone for your sustained concern, thoughts, prayers, hope and optimism for Natalia, her family, their journey, and her upcoming return home.

What a day that will be.

And although the walk in the park with Scarlett and Martin may have to be a snowshoe or cross-country ski, that day will come as well.

We’ll continue to keep you updated as Natalia’s victories continue - and it won't be long now before Nat will be online, typing, and sharing her journey again with all of you.

Myles

TO Star Coverage

The Toronto Star's coverage and support of Natalia's story continues - here is a link to an article today - special thanks to reporter Barbara Turnbull.
http://www.healthzone.ca/health/yourhealth/women%27shealth/article/730426--miracle-lung-transplant-call-came-literally-at-11th-hour?bn=1
To help keep you updated, Natalia continues to improve w/ leaps and bounds - general swelling has come down signficantly in the last 24 hours and today doctors tried to remove her ventilator (ahead of their original forecast of up to 2 weeks post-op) but quickly realized that her body isn't quite ready yet. Soon though. Soon.
Myles Slocombe

CBC Coverage

Here are some links to CBC's most recent coverage on Natalia as the new show "Connect with Mark Kelley" follows the journey...
Installment 4 - On A Mission: Natalia's New Lungs:
http://www.cbc.ca/connect/2009/11/on-a-mission-natalias-new-lungs.html
Connect's main page for the story:
http://www.cbc.ca/connect/2009/11/natalias-new-lungs.html
Continued thanks to Producer/Reporter Nick Purdon.
Natalia's recovery continues to progress - reaching the 72 hour milestone tonight!
Myles Slocombe

On The Comeback Tour, How You Can Help + Online Resources

Hi Everyone,

It gives Martin and team great pleasure to let you know that Natalia is doing very well since last night’s blog post. In her typical fashion, she’s fighting, fighting, fighting, starting to make progress in her recovery sooner than anticipated, and is currently exceeding expectations. The bleeding which was an issue has completely stopped. And all of her vitals are at normal levels. She does have a bit of a blood infection but it's being managed. The sedation has been reduced enough for her to start to wake up and open her eyes. As of right now, she can communicate by blinking & nodding yes/no and is cognisant of the battle she’s making strides towards winning. As Martin updated her and explained the gravity of what she's been through, her tears started to flow. Whether she will remember today once she gets past this next phase is to be determined.

As an aside, to help raise awareness about the trials of terminal illness and the incredible importance and benefits of organ donation, as most of you know, Natalia and family’s journey has been followed in the media --- to the chagrin of some and gratitude of others.

They made the choice to make their private story a lot less so in the hope that it would bring a greater good.

The outpouring of support for this choice has been overwhelming. The number of people who have written to say they have been inspired by Natalia’s story....inspired by Natalia and her family....inspired and motivated to make that important decision about their organ donation wishes should anything ever happen....to discuss their wishes with their loved ones (even better is to also make wishes known via signing organ donation card and even more importantly registering with provincial organ donation agency as a matter of record [see links below])....well....it has been equally inspiring and rewarding for Martin and all.

Countless people have also reached out and offered help in Natalia's time of need. Everything from babysitting Scarlett, to dropping off food, to coming by the hospital, to sending out emails to raise additional awareness. Martin and family can never thank you enough. Right now there's enough support to babysit Scarlett until she's well into her 30's (hopefully that won't be necessary:), feed an army, and keep a signficant part of the Toronto population awake with vats of tea and coffee.

Here is what you can do to really really help:

Consider making the very personal choice about organ donation, and take time tonight to make your organ donation wishes known.

On behalf of Natalia, her family, the approximately 4000 Canadians currently on transplant waiting lists; and of course on behalf of future Canadians who will need the gift of life, to those that have already done so: thank you, thank you, thank you.

Hopefully events over the last few days will inspire even more of you to do the same, because it really does save lives and makes the most profound difference for entire families and many many others.

On the media coverage front, tune into CBC’s “Connect with Mark Kelley” tonight for an update on Natalia and visual account of the last few days.

Also, here is some recent coverage by our Team Get Nat Lungs supporters at the Toronto Star:

Today:

http://www.healthzone.ca/health/newsfeatures/article/729390--new-mother-well-after-double-lung-transplant
Yesterday:
http://www.healthzone.ca/health/newsfeatures/article/729154--surprise-lung-transplant-gives-mom-renewed-hope

CBC Coverage from last week as promised:
http://www.cbc.ca/connect/2009/11/on-a-mission-update-on-natalias-health.html

Very best to you all,
And here’s to Natalia’s continued recovery,

Myles Slocombe

It’s never too late to register your organ donation wishes. By making your wishes known, you have the opportunity to save up to 8 people’s lives and enhance the lives of up to 75 more should, God forbid, something happen to you. In many cases, when families lose a loved one, the gift of life their loved ones were able to provide is the one tangible silver lining that brings a degree of comfort at a time of loss. Don’t just discuss it with loved ones: sign your donor cards and add your name to applicable provincial registries in the provinces that have them. Even more powerful is to state your wishes in a living will. All of the above will let your next-of-kin know your intentions, having your name in a registry can save important time, and a living will with a health care directive carries the most amount of weight.

For more information and to register your wishes now:

->Alberta, Nunavut, Northwest Territories:
No registries at this time – sign the back of your health card
->British Columbia:
http://www.transplant.bc.ca/index.asp
->Manitoba:
http://www.gov.mb.ca/health/donor.html
->New Brunswick:
http://www.snb.ca/e/0001e.asp
->Nova Scotia:
http://www.legacyoflife.ns.ca/
->Newfoundland & Labrador:
Donor Card/Driver’s Licence
->Ontario:
http://www.giftoflife.on.ca/page.cfm?id=3F79E442-F7FD-4057-AA63-7B0279A17EF1
->Prince Edward Island:
Place sticker on your health card renewal form onto your health card and/or have red heart engraved into your driver’s license at time of renewal
->Quebec:
Obtain donation sticker from local hospitals and pharmacies and attach it to your health card
->Saskatchewan:
http://www.health.gov.sk.ca/organ-and-tissue-donor-information
->Yukon:
Donor Card

ADDITIONAL RESOURCES:
http://www.organ-donation-works.org
http://www.recycleme.org (Ontario only, but a very effective & informative website)

11:59 Of The 11th Hour

Hi Everyone,

At no time was hope ever completely lost but I must admit things did reach a stage for Natalia and the decline of her health in the last few days (CO2 levels came down w/ the Novalung but getting enough oxygen into her blood was starting to prove an insurmountable challenge plus she was going septic) that makes writing the following 3 words a rather surreal and hard-to-believe experience:

NATALIA GOT LUNGS!!!

Yes....you read it correctly....

NATALIA GOT LUNGS!!!

After a successful transplant she is back in the ICU where she is stabilized and doing well considering the battle she has been through.

There was some initial concern about post-operative blood loss but that is being controlled, her blood pressure has become normal again, her C02 levels are currently 39 vs 120+, she is now receiving 40% oxygen on a ventilator vs. 100%, her oxygen saturation is 98, her temperature is up at 38.3 degrees C but white blood cell count is down to 13 (which suggests her immune system isn’t creating white blood cells to fight against her new organs). Her O type lungs are healthy and working.

Apparently Natalia will likely be kept completely sedated for several more days and it’s unlikely that she will be coming off the ventilator for the next 2 weeks or so (when she does come off it will be done in stages) because she is currently too weak to breathe on her own.

How close things came for Natalia is hard to fathom and harder to convey.

It has been discussed and agreed by Martin and family that the timing was quite literally a miracle.

To give you a sense of how close things were, when I spoke with Martin less than an hour before the call came out-of-the-blue he was literally at his office preparing his last will and testament and putting his business affairs in order as a precautionary measure in preparation for the possibility and hope of going into surgery as a live donor to try and save her life.

Indeed, Martin, John and Chris were fully and equally prepared to hear the results of a meeting with doctors scheduled for yesterday afternoon that either A) Natalia was no longer a candidate for any form of transplant due to her deterioration or, in their hope and estimation more likely B) the living donor option would be moving forward and likely moving forward almost immediately with 2 of the 3 of them before it was deemed too late to be viable, her candidacy removed, and all options and hope lost.

And then, the lungs came.

During what must be a profound period of mourning for another family right now, the ultimate gift was bestowed upon Natalia. The most generous gift a human could ever possibly receive has been provided by complete strangers and the gratitude of Natalia’s family cannot be expressed in words.

There’s actually quite a lot about the last while that can’t really be expressed in words.

Natalia’s journey - her battle, her will, her spirit, her determination, the love she has for her family and the love her family has for her - defies measurement and defies description.

It's a story that couldn't have had many more twists, many more turns; any more ups, any more downs - and any more at stake.

Martin and family are doing really well. They’ve been on the rollercoaster ride of rollercoaster rides as you know, and currently have what I think is a sense of cautious relief with elements of residual disbelief. The reality and extent of the recent course of events hasn't had a chance to settle in for them yet, plus they are fully aware of the fact that Natalia is still in a fragile and vulnerable state. So they’re optimistically realistic or realistically optimistic, one of the two.

Natalia's battle has been one of unbelievable proportions where human will, science and the skill of incredible doctors and medical staff all came together to beat what was quickly becoming a certain path - but as she sleeps and rests and recovers right now she is not out of the danger zone yet.

But she is on the other side now. A new battle has begun. And also another chapter.

A humble and continued thank you on behalf of Natalia and her family for the concern, thoughts, love, prayers and support of all of you, and to the donor and donor family who gave so much.

We’ll continue to keep you posted as things progress for Natalia. There will be more obstacles. But there will also be more victories.

And Natalia is a giant leap closer to that walk in the park.

Myles

Everything's Okay

Hi Everyone,
Due to some patient confidentiality policies that we understand and respect, it's best that we not publicly blog current events at the moment - please know that Natalia is doing well, and we will be writing more soon.
As always, thank you for your support....your thoughts....your prayers.
Myles

Just Around the Corner

Hi Everyone,
So far things are going well with Natalia's new phase on the Novalung. Her CO2 levels have been substantially reduced from 120's down into the 50's which is a safe zone (we hover in the 40's), and there has been no indication of bleeding on the blood thinners so things are very stable which is excellent. With some additional research it's my understanding that the Novalung was invented in Germany back in 1996 and since then there have been approx 1200 uses of it in Europe with a 95% success rate. In Canada or North America it's been used 13 times to date, and in every single case it has enabled recipients to make it until lungs became available. If things remain stable for Natalia, there's every reason why the 100% success rate will remain exactly the same. She has some time (approx 1 month) and due to highest status for next set of B+ or O lungs that are the right size, they're just around the corner. Plus we still have the living donor option - Hanna and Maria have been removed from the list of potential candidates due to age and size, but Chris, John and Martin remain in contention and are busy undergoing a battery of tests.
Keep up the positive thoughts, keep up the positive prayers...let's get this done!
Myles